Monthly Archives: September 2006

This letter has been mailed to correspondence@option.org and posted here.I have just read your press release announcing Raun Kaufman’s appointment as Director of Autism Treatment Center of America. I fully endorse the sentiments expressed by Kevin Leitch in his Open Letter to Raun Kaufman. I too am appalled to see that you are exploiting the deaths of Katie McCarron and Ryan Davies to promote your organization. This is in direct contradiction of the wishes of Katie’s family. Katie’s grandfather, Mike McCarron has paid eloquent tribute to Katie’s memory on Kristina Chew’s Autism Vox that contains these words.

“I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.”

Please read it in full and you will learn that Katie was a vibrant, happy girl who was much loved and loving in return. Her life was full of hope and not the hopelessness that you suggest.

Omissions and Inaccuracies

I was also concerned by the factual omissions and inaccuracies in the press release. Most glaring was the failure to correctly identify Ryan Davies as having Fragile X Syndrome. Or are you suggesting that SonRise can also repair abnormalities on the X chromosome?

The prevalence figure of 1 in 10,000 that you cite has no basis in fact. The landmark epidemiological study in the UK established a prevalence of 4.5 in 10,000. (Lotter 1966) When Lorna Wing (Wing and Gould 1979) discovered that autism was not a narrow disorder but was in fact a broad spectrum this raised the prevalence to 20 in 10,000. At this time most cases of autism were thought to be associated with mental retardation. The introduction by Wing (1981)of the work of Hans Asperger to the English speaking world reversed that. By identifying and including autistic people with average and above average IQ the prevalence rates do indeed approach 1 in 100.

The press release initially uses “autism” to refer to

“children [who] will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.”

It goes on to say that,

“According to the National Autistic Society, it is estimated that over half a million people have autism in the UK, with more than 2 million people affected by the disorder.”

It later refers to autism as one of many autism spectrum disorders.

“Autism treatment specialist Raun K. Kaufman is currently on a 10-city free public lecture tour across the UK and Ireland this September entitled: Breakthrough Strategies for Autism Spectrum Disorders. The specific strategies he will address have been shown to have an immediate impact on children with Autism, PDD, Asperger’s Syndrome, and other related developmental challenges.”

Anyone unacquainted with the facts or the way that the terminology has changed over the years could be forgiven for taking this to mean that there are now 500,000 “unreachable” people with autism alongside all the others on the spectrum and presume that they make up the “more than 2 million people affected by the disorder.”

According to the NAS there are an estimated 528,500 people, both adults and children, on the autistic spectrum in the UK. But this figure encompasses the entire spectrum: Autism, Aspergers, PDD-NOS etc. It includes over 400,000 people with average or above intelligence. With proper support in childhood this group will require less support during adult life and many if not most will be completely independent. There are only around 23,000 people with the severest forms of autism described by Kanner and measured by Lotter and an estimated 93,000 with other spectrum disorders who will probably require some level of support throughout their lives. The 2 million refers to their immediate families, who are indeed affected by a triad of impairments, if we define that triad as impairments in the health, education and welfare services available to autistic people and their families.

Misinformation and Misunderstanding

Compared to the unethical exploitation of these two children’s murders it may seem unduly pedantic to go on to question the accuracy of the information. But misinformation leads to misunderstanding. It is this lack of understanding that fosters feelings of helplessness and hopelessness in parents. Your publicity material strongly suggests that autism is a hopeless condition unless people turn to you in order to

“learn how to help their children, for the first time, to begin to cross the bridge from their world to ours.”

By talking up the hopelessness of autism in this way you are no better than the snake oil merchants who tout biomedical cures for autism on the back of a spurious autism epidemic. And what of the parents who come away from your “free public lecture tour” convinced by your message of hopelessness but unable to afford your package of hope or persuade a charitable foundation to fund it for their child? Who will bear the ultimate responsibility if any of them follow in the footsteps of Karen McCarron or Alison Davies?

When scandalous events come to light the local community are always agreed. “We had no idea.” “He was such a pillar of the community.” “They babysat our children.” “They always gave generously to charity.” Etc.

So how will the good people of Silver Spring, Maryland, USA react when some of their own are finally exposed for using bad science to perform medical experiments on helpless children by pretending they have a cure for autism and persuading the parents to claim back the cost from their medical insurance?

It would be nice if they could read it first in the local press. So I am copying this to the editors of the:

All that follows is already in the public domain. All I have done is provide a summary. The editors can check it themselves or email me with any queries about sources.

THE STORY SO FAR

Doctor Mark Geier and his son David have been trying to establish their credentials as autism researchers. To boost their credibility David claimed to be a graduate student in biochemistry at George Washington University. But neither of the Geiers currently have any academic position. They operate out of the family home in Silver Springs, Maryland.

This makes it difficult to get Independent Review Board approval for their research. The one time the Geiers did get approval, for a study of the Vaccine Safety Database, access was suspended when they broke the rules and compromised patient confidentiality. So the Geiers set up their own sham IRB with friends and family to impress journal editors and get their work accepted for publication. Because they have so little actual research they tend to recycle their ideas and republish in slightly altered forms. Sometimes they recycle the wok of others. One of their papers is remarkably similar to a paper that was previously published by other academics working for the CDC. They also take the work of genuine autism experts and quote it out of context as if it supports their ideas, when it does not.

The dubious research practises of a couple of obscure academics would not be newsworthy except for the fact that the Geiers use this dodgy research to bolster their reputation as experts on the link between vaccines and autism. This reputation has so far failed to stand up in court. Mark Geier’s latest appearance as an expert witness was dismissed because the court doubted he was even qualified to make a diagnosis, never mind offer an expert opinion on it. His testimony has been similarly rejected on nine previous occasions.

David Geier has no medical qualifications and his degree does not even equip him for post graduate scientific research. Mark Geier is a genetic counsellor. He has no specialist qualifications or board certification in any of the areas where he now claims expertise: pediatrics, neurology and endocrinology. In fact Dr. Geier was not even successful in sitting for his Medical Board examination in the specific field of pediatric genetics.

But all this is lost on the parents who not only believe the Geiers’ unsubstantiated ideas about autism, but also entrust them with their children’s health. As a result an unknown number of autistic children have regular blood draws, well in excess of those permitted by the FDA. Then they are repeatedly injected with Lupron, a drug more commonly used to treat prostate cancer or to chemically castrate convicted sex offenders. This is to remove the alleged high levels of testosterone in autistic children.

All this costs thousands of dollars which the parents are supposed to claim on their insurance because of Central Precocious Puberty, a very rare complaint which these children do not have. On top of that the children are then treated with DMSA, which is supposed to remove the mercury from their bodies and cure their autism, and a powerful steroid called Androcur. Nobody knows what the side effects are from long term use of these powerful drugs together on small children and the Geiers have not even bothered to find out. They even claim that Lupron is 99 per cent natural and has no side effects! Not even the makers claim that!

WHEN WILL IT END?

The parents who trust the Geiers do not normally trust the giant drug companies. It is just the opposite. They blame big pharma for the vaccines that they believe have damaged their children and turn to alternative medicine for a cure. The Geiers have no such problem. When the real damage done to these children finally emerges the Geiers will be counting their wealth from the patent agreements they are currently seeking in conjunction with TAP Pharmaceuticals, the makers of Lupron.

That is, unless the authorities act and we can replace this screen shot with mugshots.

I expect everybody knows about the AWARES Conference. Adam Feinstein is no slouch when it comes to getting the news out. I was delighted to read in Adam’s latest update that Merry Barua, director of India’s leading autism organisation, Action for Autism will be taking part. Regular readers will remember my post on Action For Autism and the more recent Letter from India that featured Merry.

Here are some other notables from the world of autism who have featured on my blog and are contributing to the AWARES Conference.

Mitzi Waltz, I’ve spelled your name right this time, Mitzi 🙂 Have you written your paper yet? 😛

Other contributors to the AWARES Conference who have had an honourable mention in these pages are

Laurent Mottron, who is making an important contribution to our understanding of autistic intelligence, in no small part due to the assistance of co-worker and autistic advocate, Michelle Dawson.

Michael Fitzgerald, who has some intriguing ideas about autistic personages from the past.

Paul Shattock, another very good friend (see note below) with whom I often agree to disagree about diets and vaccines and things that go burp in the night, who featured in my very first blog entry.

I have not blogged about Stephen Shore yet. But Stephen, along with Dennis Debbaudt, Luke and Jacqui Jackson and myself was a contributor to Asperger Syndrome in Adolescence, edited by Liane Holiday Willey. My turn next year, Adam?

Carole Rutherford also deserves an honourable mention. Carole is a stalwart of the Asperger UK and Autism-UK email lists. We do not always agree about causes and interventions for autism. But when it comes to interventions on behalf of autism Carole is a formidable ally. She is one of the co-founders of Autism-In-Mind (AIM). AIM takes the concerns of autistic people and their families to the heart of government, lobbying and meeting with ministers in an attempt to obtain autism friendly policies and legislation. Carole also volunteers her services on behalf of other parents battling the system, while helping her sons face the particular challenges that their autism brings.

Every year Adam manages to invite someone with little or nothing to add to our knowledge of autism but they do have a book to sell. Last year it was David Kirby.This year it is Richard Lathe 😦

NOTE BELOWTo qualify as a “good friend” means I have been happy to buy you a drink in the past. “Very good friends” have bought me a few in return. Larry, it’s your round. 🙂

And for all my online friends, please enjoy a virtual glass of good cheer until we can meet in person. 🙂

I posted a follow up to “Who and What drives Autism Research that seems to have been swallowed up. It’s late and here is the short version.

Autism Diva has written a great post about the lack of autistic input into policies that affect autistic people and Mitzi Walz wants to know why learning disabled people are listened to and autistic people are ignored.

I’ve decided to look at why the direction of autism research differs so greatly from learning difficulty research, and what we could do about it. For example, particpatory (and occasionally, emancipatory) research designs are increasingly common in the LD world, with organisations of people who have intellectual disabilities participating in ethical vetting, determining research directions, and ensuring that research undertaken will actually be of direct benefit to themselves. This isn’t happening in autism research.
I’ll be looking at lots of factors, but I suspect that a major one is the lack of representation of organisations of people with autism in the research community, and nonexistant (or tokenistic) representation of individuals with autism on the boards/advisory panels of research-focussed autism organisations like NAAR and CAN. I’ve just written a paragraph that starts with

“most, perhaps all, of the organisations founded to drive autism research over the past 15 years do not have people with autism or Asperger syndrome on their governing boards or advisory committees”.

I can substantiate this with NAAR and CAN–do you know of ANY research- focussed autism organisation that differs from this norm? I’m not counting organisations that advocate for improvement and redirection of autism research, just those that are actually funding/driving research.
I would appreciate any information or help that you can offer.
Mitzi can be reached at Sunderland University.

One autism research org that looks like it is getting the balance right is Research Autism. They have a thing called the Collaberative Autism Research Forum where autistic people and their families come together with clinicians and scientists to discuss priorities for research. The first forum was on sleep problems. The next is on positive outcomes for autistic adults.

Research Autism has a very positive mission statement.

Research Autism (the Trust) is an independent, non-profit making charitable Trust committed to improving the lives of individuals on the autistic spectrum through research into therapeutic or remedial interventions. To this end the Trust will raise funds, undertake, support or cause scientific research to be carried out into the effects of therapeutic or remedial interventions in autism and related conditions.

Our priority will be those interventions intended to make a significant impact on the disabling effects of autism and related conditions and promote and enhance the quality of life of individuals and their families. It is part of the mission of the Trust to disseminate and publish the findings of research and to bring together leading researchers in the field.

We believe in the value of people on the autistic spectrum and the contribution they make to the community. We also recognise the real difficulties they face and their need for assistance to overcome these in realising their potential. We will work with the broad academic, professional, business and wider communities nationally and internationally, in support of our aim.

In the USA the National Institute of Mental Health has just launched a major new research programme into autism. It comes in three parts.

Suffer the little children?

One study will define differences—both biological and behavioral—in autistic children with diverse developmental histories. Increasingly, scientists are considering the likelihood of “autisms,” that is, multiple disorders that comprise autism. These studies seek to better define the subtypes within autism. Children with regressive autism appear to develop normal language and social skills but then lose these with the onset of autism before age 3. Non-regressive autism, the more common form of the disorder, begins early in life, possibly before birth, with evidence of subtle deficits throughout development. Children with these two forms of autism will be compared with those who have other developmental disorders, including various forms of developmental delay, as well as children with typical development. In addition, researchers will study a subset of the children in this study to investigate environmental factors that may trigger symptoms of autism.

Depending on each child’s study group and age, participants may undergo the following tests and procedures:

Baseline Visit

Medical and developmental history, physical examination, psychological, cognitive and medical tests to assess symptoms of autism or other developmental disorders, photographs of the child’s face, collection of hair, urine and baby teeth samples. If available, hair samples from the baby’s first haircut and from the biological mother’s hair are also collected.

Overnight electroencephalogram (EEG; for children autism developmental delays and Rett Syndrome): A special cap with electrodes is placed on the child’s head to measure brain waves (brain electrical activity) while the child sleeps in the hospital overnight. Healthy volunteers do not undergo this procedure.

Magnetic resonance imaging (MRI) scan: The child stays in the scanner, lying still for 10 to 15 minutes at a time. Since it may be difficult for the child to lie still, the test may be scheduled for a time when the child is likely to be sleepy, or the child may be sedated.

Lumbar puncture (for some children in the autism, developmental delay and Rett Syndrome groups). This test may be done under sedation.

The only baby hair study that I am aware of purports to demonstrate that autistic children have an impaired ability to secrete mercury. As science goes it is complete junk. But that does not deter those who believe that most if not all cases of autism are actually a novel form of mercury poisoning. They sieze on the study to explain how the microscopic amounts of mercury once found in childhood vaccines containing the preservative thimerosal were able to accumulate in the brains of these children and cause their autistic behaviours. According to them if you remove the mercury via chelation you will “recover” the child from autism.

Lumbar punctures have been used by researchers looking for measles virus in the cerebral spinal fluid (CSF) of autistic children in order to prove that MMR causes autism. But as Mike Fitzpatrick points out in his book, “MMR and Autism. What parents need to know,” when lawyers acting for MMR litigants in the UK tried to have lumbar punctures carried out in the hope of finding measles virus in the CSF of the litigants’ children clinicians in the UK refused on ethical grounds. Invasive and potentially dangerous procedures should only be pursued for the benefit of the child. So they flew the children to Detroit where ethical standards are apparently lower than in the UK. Subjecting children to these procedures for research purposes is bad enough. But doing it in order to find evidence for a discredited theory is child abuse.

Because whichever country you go to you will find that public health officials are united in their opposition to the idea that mercury based preservatives or vaccines themselves are in any way responsible for autism. This is not because the entire world is in thrall to big pharma. It is because researchers have looked for a connection between autism and vaccines and have found none. The burden of proof lies with the proponents of the vaccine damage hypothesis. But until they come up with a much stronger case there is no excuse for using invasive procedures on children that have no clinical justification.

Still looking for the autism pill 😦

It may be that I am wrong and NIMH are not looking for measles in children’s CSF. They might be looking for cytokines instead. There has long been a suspicion that regressive autism could be connected to an excessive immune response, indicated by elevated levels of cytokines, that cause inflammation in the brain. This connects with the second element of the research programme.

In another study, NIMH researchers will examine the use of the antibiotic minocycline to measure its usefulness in treating regressive autism. Past research suggests that autism may be linked with changes in the immune response that cause inflammation in the brain. Minocycline has known anti-inflammatory effects and has been shown to be helpful in other brain disorders such as Huntington’s disease.

Researcher Dr Carlos Pardo-Villamizar said: “These findings reinforce the theory that immune activation in the brain is involved in autism, although it is not yet clear whether it is destructive or beneficial, or both, to the developing brain.”

Similarly, samples of cerebrospinal fluid obtained from six children with autism were also found to contain elevated levels of cytokines.

The researchers say it might eventually be possible to develop a diagnostic test for autism based on looking for signs of inflammation – and that treating this inflammation might reduce the symptoms of autism.

However, Dr Andrew Zimmerman, a paediatric neurologist at the Kennedy-Krieger Institute in Baltimore who also worked on the study, said it was possible that inflammation was produced as a result of the brain trying to combat some other process damaging to brain cells.

So we know that the inflammation occurs in some autistic children. We do not know what causes the inflammation. We do not know if it is harmful or not. It may even be beneficial. But the folks at NIMH are going to treat it anyway to see what happens.

A report in last month’s New Scientist also suggests that inflammation may interfere with normal brain development in autistic children. But it ends with this warning from Matthew Belmonte, senior research associate at the Autism Research Centre at the University of Cambridge in the UK.

“Until we know exactly what it is that causes the abnormal development of grey matter we cannot develop drug treatments.”

Unbelievable!
The final study is even more alarming. NIMH is proposing to chelate autistic children to see if it works!

NIMH will conduct a controlled study to test the efficacy and safety of chelation for children with autism spectrum disorders. However, the chelation also can remove essential mineral nutrients, such as calcium, iron, and zinc.

“Because chelation therapy is not specific for mercury alone, it is important to conduct a systematic, controlled trial to determine whether or not chelation therapy is beneficial or potentially harmful to children with autism,” says Susan Swedo, M.D., who leads the branch on pediatric behavioral research in the NIMH Division of Intramural Research Programs, where the autism studies are being conducted.

Are NIMH studying autistic children or experimenting on them? I have written to the NIMH press office as follows.

Dear Karin LeeI am writing in relation to the following item from your recent press release.“The third study seeks to address the widespread but unproven theory that autism may be treated successfully by chelation therapy, which seeks to remove heavy metals from the blood. Chelation is more commonly used to treat lead toxicity, but currently, many families seek the treatment to try to remove mercury and other metals from their autistic children’s blood. This practice is based on the belief that many cases of autism were caused by exposure to thimerosol, a mercury-based preservative previously used in childhood vaccines.”I have a number of questions.

Can you point me to any published research that demonstrates that autistic children do have elevated levels of heavy metals in their blood?

How do you propose to recruit children to take part in the study?

Will children who have already undergone chelation be eligible to take part in the study?

Will you be testing children following an existing treatment protocol, e.g. one authorized by DAN! or will you be administering your own?

How will you control for potential confounds from other biomedical interventions that are often carried on in parallel by parents who support chelation?

I do hope you can help me with these questions and thank you for your time and cooperation in this matter.

Here is an old story

from The Independent, July 12, 2006

Sir Keith Joseph, father of Thatcherism, ‘has Asperger’s syndrome’LONDON, UK: Sir Keith Joseph, the father of Thatcherism whose free market principles are still followed to some extent by Tony Blair, had a form of autism that is reflected in his political philosophy, a psychiatrist believes. The former Conservative education secretary, who was Margaret Thatcher’s mentor in the 1970s and 1980s, had Asperger’s syndrome, a condition that renders sufferers unable to interpret social situations or to empathise with other people, according to Dr Michael Fitzgerald, professor of child and adolescent psychiatry at Trinity College Dublin.

I know that Professor Fitzgerald has made a study of famous people from the past whom he thinks were autistic and has recently published a book on the subject, The Genesis of Artistic Creativity. But is he really saying that you can diagnose a neurological disorder on the basis of someone’s political beliefs? Not exactly. Because he goes on to describe
Joseph – who died in 1994 – as a brilliant lawyer who served in Harold Macmillan’s government in the 1960s but was prone to eccentric behaviour and errors of judgement that could be attributed to his mental condition,

In the early 1970s, he was urged by friends to challenge Edward Heath for the Tory leadership but he lost any chance of winning after making a speech in Birmingham in 1974 in which he implied that the lower classes should be deterred from having children.

Professsor Fitzgerald said: “That is the kind of comment he would make and mean it from the depths of his heart, but it was absolutely strange. He had a lack of empathy and he was naïve in social situations. Once attending a camping exhibition, he surprised visitors by giving a lecture on Communism. He was regarded as so eccentric that the other members of the Cabinet suspended normal rules of behaviour for him.”

They also shared his political beliefs and no one is suggesting that Thatcher et al had Asperger Syndrome. Autism is the “in thing,” a good peg to hang a story on. Never mind the fall out for real autistic people who are already dealing with public misunderstanding and misinformation.

And here is a new story

from yesterday’s Times suggesting that socialist Gordon Brown shares Joseph’s political autism.

‘Autistic’ Brown loses the plot

Gordon Brown is Labour’s Richard Nixon. That is not to suggest for an instant that he is a crook — far from it — but he has Nixon’s combination of immense political talent and utter clumsiness. The buttoned-up suit, the mouth slightly agape, the physical awkwardness, the alarming smile which seems to appear from nowhere as if a button marked “smile” has been pressed in his head, the nocturnal brooding on imaginary grievances encouraged by a group of chippy cronies — Brown, like Nixon, suffers from a kind of political Asperger’s syndrome. Intellectually brilliant, he sometimes seems socially barely functional: a little bit . . . odd.

Imagine using any other disability as a pejorative explanation of politics. Alzheimers, Schizophrenia anybody? If, like me you are tired of journalists using autism as a metaphor for whatever incompetency they are currently writing about please complain to the Sunday Times.

Letters to: The Sunday Times, 1 Pennington Street, London E98 1ST or via e-mail: letters@sunday-times.co.uk Fax 020 7782 5454. Letters should arrive by midday Thursday and include the full address and a daytime and an evening telephone number. Please quote date, section and page number.

Born on a Blue Day: A Memoir of Asperger’s and an Extraordinary Mind
by Daniel Tammet
242pp, Hodder and Stoughton, £16.99

I have only read one of them and would be interested in other people’s opinions of all these books. With so much being written about autism these days it is difficult to keep up. a lot of books do not seem to add anything new to our understanding and it is easy to miss the ones that do. A recent exchange on Ballastexistenz quite rightly points to the need for a book ( or books?)

by an autie about autistic people that’s actually political, informed by at least something like disability politics and the like, rather than this long string of autiebiographies, self-help manuals, self-dissections, poetry (usually poetry that would never have been published if the person were not known to be autistic), and medicalistic textbooks.

The book I have read, Born on a Blue Day, is an autiebiography that does add a lot to my understanding. Apart from being a tale of synaesthesia from the inside it contains some fascinating social comment on the changing attitudes to disability. For example when Daniel’s grandfather started having epileptic siezures just after the end of the 1939-45 world war his grandmother was advised to divorce him and remarry. She followed the doctors’ advice and Daniel’s grandfather was committed to an institution for ex-soldiers with mental health problems.

Daniel Tammet was the subject of a TV documentary in the UK, Brainman and he describes the background pressures that helped to shape the film.
This passage about his meeting with Kim Peek gives the lie to the myth that autistic people are somehow more emotionally impaired than the rest of us.

I had been moved by the enthusiasm with which he and his father had welcomed me and with which they had openly and candidly shered their story. Kim’s special gift is not only his brain, but also his heart, his humanity, his ability to touch the lives of others in a truly unique way. Meeting Kim Peekwas one of the happiest moments of my life.